Chat with us in Facebook Messenger. Find out what's happening in the world as it unfolds.

Photos:The smallest patients

The smallest patients – Connor Wilson was born February 13, 2012. He had his first surgery at Kentucky Children's Hospital a week later and a second surgery on May 11. On August 3, 2012, his heart stopped, but doctors got it beating again. "He never got better," says his mother, Nikki Crew.

Hide Caption

1 of 10

Photos:The smallest patients

Connor Wilson – Connor's parents say while they were in the hospital, they asked staff multiple times for information about survival rates, but never got answers.

Hide Caption

2 of 10

Photos:The smallest patients

Connor Wilson – Connor passed away on August 30, 2012. In October, Kentucky Children's stopped doing heart surgeries. Dr. Michael Karpf, executive vice president for health affairs at the University of Kentucky's health care system, said he put the pediatric heart surgery program on hold because the mortality rates weren't what he wanted them to be.

Hide Caption

3 of 10

Photos:The smallest patients

The smallest patients – Waylon Rainey was born September 13, 2012, with a severe heart defect and underwent a 12-hour surgery at Kentucky Children's Hospital when he was a week old.

Hide Caption

4 of 10

Photos:The smallest patients

Waylon Rainey – After surgery, Waylon's chest was so swollen it was left open for two weeks. For months, he suffered seizures and multiple brain bleeds, his parents say. Waylon's mother Tabitha Rainey says a cardiologist privately suggested that Waylon would do better at another hospital. He was transferred to the University of Michigan and survived after undergoing additional procedures.

Hide Caption

5 of 10

Photos:The smallest patients

The smallest patients – Jaxon Russell was born September 26, 2012. On October 2, he had his first surgery at Kentucky Children's to fix a congenital heart defect.

Hide Caption

6 of 10

Photos:The smallest patients

Jaxon Russell – Jaxon had a second surgery on February 5 at a different hospital. His parents say it lasted four hours longer than expected because of an infection and scar tissue from the first surgery. "The first surgery was botched," his father, Shannon, says.

Hide Caption

7 of 10

Photos:The smallest patients

Jaxon Russell – The Russells are now raising awareness about congenital heart defects with their "Lil' Heart Sluggers" campaign.

Hide Caption

8 of 10

Photos:The smallest patients

Rayshawn Lewis-Smith – Rayshawn Lewis-Smith was born with congenital heart defects, requiring 10 surgeries at Kentucky Children's Hospital before he was 6 months old. Rayshawn's mother, Joequetta Lewis, created the Facebook page "Prayers for Rayshawn" to share the ups and downs of her "little warrior."

Hide Caption

9 of 10

Photos:The smallest patients

Rayshawn Lewis-Smith – "As of 9:37 a.m. on 10/22/1012 Rayshawn Lewis-Smith gained his angel wings," says the Facebook page. "He had a very hard fight but he fought to the end."

Hide Caption

10 of 10

Story highlights

Following a CNN investigation the University of Kentucky released mortality data from pediatric heart surgery program

The program has a 5.8% overall mortality rate from 2008 to 2012, slightly higher than the national average (4%)

In 2012 the year the program was suspended the mortality rate was 7.1%

Following a CNN investigation, The University of Kentucky released some data on its pediatric heart surgery program, showing a 5.8% overall mortality rate from 2008 to 2012, slightly higher than the national average of less than 4% mortality.

The data was first requested in December 2012 by a local journalist, and again in January 2013 by the Kentucky Attorney General's office. The University repeatedly declined to release the program's mortality rate, saying that information would compromise patient privacy laws.

The newly-released data shows that in 2012, the year of the program's suspension, the mortality rate climbed to 7.1%, according to the University of Kentucky.

"Anytime a question is raised about a clinical program or a patient's care, we bring all involved parties together and review the situation and circumstances in a 'no holds barred' manner," wrote the University of Kentucky in a statement last Friday. "Sometimes we even choose to put a program 'on hold,' until we are certain that we are doing everything necessary to provide the highest level of care. This is what we did with our Pediatric Cardiothoracic Surgery program."

"The mortality rates ranged from 4.5 percent to 7.1 percent. These ranges are comparable to national mortality rates averaging 5.3 percent for programs of similar size to ours," says the University statement.

Comparing oneself to programs of a similar size isn't good enough, says Tabitha Rainey. Smaller programs often have slightly higher mortality rates than largest programs.

"These smaller institutions want to go open these programs, but they don't have all the correct measures to take care of these kids, and then they don't want to explain, and they end up losing their kids rather than sending them to a bigger facility that's more rehearsed in this," says Rainey, who began a change.org petition asking the hospital to release their mortality outcomes.

Her son Waylon was born with a severe heart defect and was originally treated at the University of Kentucky before transferring to a higher-volume program at the University of Michigan.

"Before we didn't really know what a real cardiac unit looked like, until we went to Michigan. I went there and I was amazed," Rainey said in an interview in May. If Kentucky re-opened, "then they would not be equipped enough, because they don't have the dedicated heart center for these kids."

Rainey says parents like her appreciate that the hospital gave them an overall mortality rate, but that these aren't the only figures that parents wanted. Parents want to know outcomes for specific procedures she says.

"The mixture of operations performed at various pediatric cardiac surgery programs can vary substantially," said Dr. Jeffrey P. Jacobs, cardiovascular surgery specialist at Johns Hopkins Children's Heart Surgery at All Children's Hospital.

"Consequently, programmatic performance cannot be properly assessed by comparison of overall unadjusted rates of mortality. The quality of care of a given program is best assessed by benchmarking specific risk adjusted outcomes to national aggregate data," Jacobs said. "Only then is it possible to truly assess the quality of care of a given program."

He added, "Parents have the right to know the outcome of a given pediatric cardiac surgery program for the specific operation that their child needs."